Why documenting lived experience with DEE-SWAS is critical

These are not clinical descriptions of DEE-SWAS.

They show what, as families in a global network, we share with each other about what life with this syndrome can be, day to day. It’s important to note that nothing on this website represents a universal experience or expert clinical, educational or disability advice.

Epilepsy research has already achieved incredible things, helping define syndromes, genetics and seizure patterns (for example, the seminal work of Ingrid Scheffer and colleagues) (1). However, in rare conditions more broadly, lived experience is less often captured in research (2).

Around 1 in 590 children are diagnosed with a developmental and epileptic encephalopathy (DEE), and more than a quarter present after age three, including children with DEE-SWAS and EE-SWAS (3). While individual syndromes such as DEE-SWAS are considered rare, DEEs are not rare in a global sense. There are around 2.4 billion children under 18 in the world, which suggests that more than 4 million children worldwide may be living with a DEE, based on current prevalence estimates (3, 4).

The burden is likely to be even higher in parts of the world where infections, birth complications and limited access to early care are more common, including regions such as sub-Saharan Africa and South Asia (5).

This site highlights real-life factors that shape everyday moments, to either hold a child with this rare epilepsy back or help them move forward in life, depending on how well their needs are understood and supported.

I am deeply grateful for the support my child’s care team has provided. At the same time, there are many everyday situations beyond clinical settings where children with DEE-SWAS live, learn and participate, and where additional opportunities to support them must be identified. Documenting lived experiences is a way of amplifying children’s perspectives and what families are observing day-to-day. It’s a way to increase awareness of what families and supporters are already doing to improve quality of life.

For us, there was a devastating two-year period following the onset of DEE-SWAS when we were denied the education and disability support our child desperately needed. Their wellbeing – and ours – severely deteriorated. At one point, the assistant principal at my child's school expressed concerns that the inappropriate school environment was causing our child trauma. Yet the educational setting that appeared to be the best fit for their needs was denied by the state.

From other families I have connected with, I'm very confident there are children with DEE-SWAS and other DEEs whose supporters can truly see their evolving social, learning and other non-medical needs and have invested time in finding ways to meet them. Our family has. Many of these children share common challenges around communication, cognition, behaviour, learning, participation and regulation. It's not just autism, ADHD, intellectual disability or anxiety. I know that parents like me are using practical strategies and insights gained through trial and error to create opportunities for learning, playfulness and connection. Yet these insights are not being documented or systematically shared in ways that could significantly improve child and family wellbeing and support educators in their important work.

This isn't about dismissing research or rigour. It's about recognising the urgent unmet needs of children and families and asking whether, in some circumstances, it may be unethical not to act, learn and adapt more quickly than traditional research pathways allow, particularly where the risks of trying are low and the costs of waiting are high. Time is passing. Opportunities are being lost. Families are continuing to struggle. For many, life with a DEE already feels as difficult as life can be, which makes it intolerable to accept that the only option is to wait years for evidence to catch up.

Realising this dream isn’t something any one group can do alone. It will take meaningful collaboration, between educators in classrooms supporting children with DEEs, allied health professionals, families, and the wider circle of people who know and care for these children, alongside clinicians and researchers.

1. Scheffer, I. E., Berkovic, S., Capovilla, G., Connolly, M. B., French, J., Guilhoto, L., ... & Zuberi, S. M. (2017). ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 512-521. DOI: https://doi.org/10.1111/epi.13709

2. Von der Lippe, C., Diesen, P. S., & Feragen, K. B. (2017). Living with a rare disorder: a systematic review of the qualitative literature. Molecular genetics & genomic medicine, 5(6), 758-773.
   DOI: https://doi.org/10.1002/mgg3.315

3. Poke, G., Stanley, J., Scheffer, I. E., & Sadleir, L. G. (2023). Epidemiology of Developmental and Epileptic Encephalopathy and of Intellectual Disability and Epilepsy in Children. Neurology, 100(13), e1363–e1375. DOI: 10.1212/WNL.0000000000206758

4. United Nations, Department of Economic and Social Affairs, Population Division. (2024). World population prospects 2024. https://population.un.org/wpp/

5. Feigin, V. L., Vos, T., Nair, B. S., Hay, S. I., Abate, Y. H., Abd Al Magied, A. H., ... & Gadanya, M. A. (2025). Global, regional, and national burden of epilepsy, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021. The Lancet Public Health, 10(3), e203-e227. DOI: 10.1016/S2468-2667(24)00302-5